Voices of Value Speak Up: Spotlight Multiple Sclerosis

Feb 15

Event Video

Video Playlist

Patients Rising University: Spotlight Multiple Sclerosis is a patient/consumer education event. We will bring together patients, advocates, medical experts and policy leaders to offer a comprehensive look at innovation, access and the health care reforms needed for patients living with multiple sclerosis.

Patients Rising University was developed to provide tools and teaching for patients and advocates with the desire to learn new ways to navigate an increasingly complex health care system and ensure that the patient voice isn’t muted when regulatory decisions and policy choices are made. Barriers to access are real, and often similar across disease states, but there are also unique challenges faced by patients within specific diseases – especially multiple sclerosis.

Mark you calendar as this event is open to the public and will also be live webcast. Please check back in the new year for more information on speakers, patient guests and more. We hope you will join us!

Moderators:

Jonathan WilcoxCo-Founder and Policy Director, Patients Rising

Jonathan leads the strategic and policy projects for Patients Rising in its fight for access to vital therapies and services for patients with life-threatening and chronic diseases. A Fellow with USC’s Annenberg Center for Communication Leadership and Policy, Jonathan has served as a featured on-air commentator for ABC News, NBC News, Fox News Channel and CNN. He was also a featured analyst on National Public Radio, numerous national radio programs and international networks. A contributor to the Huffington Post, his editorial commentaries have appeared in more than 25 daily newspaper outlets, including the Wall Street Journal, Investor’s Business Daily, Sacramento Bee, Los Angeles Daily News, San Francisco Chronicle, Washington Times, Houston Chronicle, Dallas Morning News, St. Louis Post-Dispatch, Detroit News and Cleveland Plain Dealer.

Dr. Beth Haynes, MD is the Executive Director of the Benjamin Rush Institute, a non-profit educational organization working with medical students to promote solutions that protect the doctor-patient relationship as the primary means of delivering quality medical care. Previously in private practice with board certification in both Family Practice and Emergency Medicine, Dr. Haynes has been working full time in health care policy since 2009. She obtained her MD from the University of Cincinnati College of Medicine and her residency training at University of Wisconsin in Madison.

Dr. Haynes serves on the executive boards of Docs4PatientCare Foundation, the Dr. Joseph Warren Institute, and the United Physicians and Surgeons of America , and is a Fellow at the Pacific Research Institute Center for Health Care Studies. Her research on cost-shifting was instrumental for amicus briefs submitted to the 11th Circuit Court of Appeals and Supreme Court challenging the constitutionality of the ACA individual mandate.

Elizabeth JamesonLiving with Multiple Sclerosis

Elizabeth Jameson is an artist specializing in the intersection of art and science. As a person living with Multiple Sclerosis, she uses neurotechnology to transform her brain scans into a vibrant, unique form of portraiture that celebrates the imperfect body and brain. Jameson collaborates with scientists, health care providers, and those living with illness, sparking conversation that deepens the understanding of illness as a part of being human.

She now focuses on how art and design assist in honoring the human experience of illness, specifically in clinical spaces such as the waiting room. Ms. Jameson’s most recent project, #FacingMS, uses art, storytelling and technology to revolutionize the untapped potential of time spent in waiting rooms. Jameson’s work is shown internationally at major universities, hospitals, and neuroscience centers throughout the world.

Dr. David Jones, MD, is passionate about his work advocating for multi-disciplinary, comprehensive care to patients with multiple sclerosis. He currently serves as chair of the MS section of the American Academy of Neurology, the co-chair of advocacy for Consortium of MS Centers, a member of the healthcare advisory committee for MSAA and the Multiple Sclerosis Foundation, a member of the board of directors for Can Do MS, and a member of the National MS Society Task Force for Access to MS Medications.

A Tampa native, Dr. Jones graduated from Wake Forest University School of Medicine in 2003. He completed his neurology residency at the University of Massachusetts and served as chief resident in the last year of residency.

Melanie RowenPatient Advocate, Living with Multiple Sclerosis

Melanie Rowen has been living with MS since 2005 and has been volunteering with the MS Society Northern California Chapter since 2011. Having faced extremely high out of pocket prescription drug costs, she offered to tell her story in order to support policy that would curb these costs for California consumers. She has been working with the Northern California chapter’s Government Relations Committee ever since. Melanie is an attorney and currently works at the law school at UC Berkeley as the Associate Director for Public Interest Programs.

Currently the Society’s Executive Vice President of Advocacy, Bari Talente previously served as Vice President of State and Local Government Relations. Since joining the National Multiple Sclerosis Society in 2004, Bari has helped people affected by MS discover the power of activism and focused the Society’s advocacy to find solutions and resources for the MS community. Prior to joining the Society, Bari worked at the American Academy of Physician Assistants (AAPA) and was selected as a fellow in the New York State Senate Fellowship Program. Bari received a BA in Political Science with a concentration in Public Policy Analysis and Public Administration from Binghamton University and a J.D. with a certificate in State and Local Government from the University at Buffalo School of Law. She is a member of the New York and District of Columbia bars.

Ms. Worthy manages advocacy and policy initiatives for Aimed Alliance, a non-profit organization that brings consumer, not-for-profit, government and industry leaders together to share information, set priorities, and collaborates toward mutual goals of improving health care through innovation. Stacey will share the results of a poll Aimed Alliance conducted on how patients view value in their health care. In addition, she will conduct a live poll with our participants in the room where we will see real time results.

VOICES OF VALUE VIDEO PARTICIPANTS

Seth MorganPatient Advocate, Living with Multiple Sclerosis

Seth Morgan is a Board Certified neurologist and Fellow of the American Academy of Neurology who practiced medicine in the Washington, DC area for twenty-three years. He is a past-president of the Medical and Dental Staff of Providence Hospital in Washington, DC. He has been involved in advocacy for people with disabilities serving as a District Activist Leader and Governmental Affairs Committee member for the Multiple Sclerosis Society, for which he was inducted into the MS Hall of Fame in 2015. He serves on research review panels for various MS programs. He is a member and current chairman of the Montgomery County (Maryland) Commission on People with Disabilities, Vice-Chair of the Alliance of Maryland Disability Commissions and Committees, and Commissioner of the Maryland State Disability Commission.

Surprisingly, Jamie Tripp Utitus’ writing career began with an MS diagnosis. What began as a personal blog (Ugly Like Me) and an attempt to cope with a shocking diagnosis, her teaching career and her growing family, soon evolved into a new profession. She left teaching and began her new MS life as a freelance writer three years ago, and hasn’t looked back. Today she blogs and community manages MS communities in over 95 countries, while writing a bi-weekly Parental Guidance blog. She is also the author of Zoe Bowie Sings, Despite All Sad Things, a children’s book about MS.